We are both active livers. We live life to the fullest -- cramming in every possible activity and wasting no time in having fun, working hard, and giving back to family, friends, community, and self. We have crossed the 55 year old line and consider ourselves active "seniors-to-be" with many decades of life ahead -- hopefully healthy and fulfilled.
We also understand that people get sick and die and have watched loved ones die -- slowly, painfully. Near the end and surrounded by love, our loved ones may have wanted doctor-assisted-suicide but that option was not available to them. Today it is -- if you live in one of the five U.S. states that allow some form of what could be called "active dying."
Active dying, sometimes known as "death with dignity," or "aid in dying" is the notion of permitting a terminally ill person to end their lives in a legal way as is the case now in New Mexico, Vermont, Montana, Oregon and Washington state. (Prior to 2008, the practice was banned everywhere except Oregon which led the way in 1997 with a law permitting a competent patient to hasten death if it could be certified that death was imminent -- six months or less away.)
The arguments for and against "assisted suicide" are not new. The Hemlock Society, the Kevorkian debate, and all of the pros and cons around "death panels" and other political misrepresentations have generated heat but no light. So maybe it's time to throw out, in this debate, the word "suicide," and create a new conversation with less inflammatory language.
A decision to have active help in dying is a part of active living. This is not about "suicide." This is about actively participation in, and direction of the end-of-life decision-making and coming to a thoughtful conclusion about how to spend your last days on Earth.
To us, living is a joy and death should be as joyful as possible -- free from pain and the interminable waiting. If the situation calls for it, we want our loved ones to hold our hands, hug us, and honor and understand a decision we want to have the opportunity to make, to let a competent physician do more than passively withhold active intervention or offer palliative care . We want that doctor to be able, with our blessing, to intervene -- to help us bring our lives to closure in peace.
Of course, there are situations in which the wrong circumstances could accompany active dying. Nobody wants to see a mentally ill patient or an abused elderly person forced over the edge. Nobody wants to see a greedy family or business seek to profit from early death. Of critical importance are safeguards that exist to prevent any form of euthanasia and other kinds of abuse.
For example, in Vermont, as in New Mexico and Oregon, the rules are clear:
a) The patient's primary physician and a consulting doctor must agree that the patient is suffering from a terminal illness with six months life expectancy
b) The patient is capable of making an informed decision to request death-inducing drugs
c) The patient (not a loved one or anyone else) must request the drugs twice, with 15 days separating the first and second requests
d) The patient must administer the drugs to themselves-- and the request for drugs must be witnessed by two disinterested people, (defined as those who are not relatives or potential heirs, employees of health care facilities where the patient is being treated, nor his or her doctor.)
e) In these states, only residents who have relationships with local doctors can get the prescriptions. (Recently, the New Mexico Supreme Court has authorized doctors to provide lethal prescriptions for a "competent, terminally ill patient to choose aid in dying.")
What is most unfair is the notion that legally, if you live in a state that does not allow assisted dying, the individual trying to end their life can be prosecuted for a crime with potential jail time. That is a double sin, leaving the ill person and perhaps an assisting person with guilt and tragedy.
So what about end-of-life care provided through hospice (which has only been a Medicare-permitted service for 28 years)? Hospice is often caught in the middle of the debate as it offers palliative care that is one step short of active dying, walking the fine line between passive sedation and active intervention. Hospice providers often oppose public referendum and legislation to legalize assisted dying because they feel they can alleviate the suffering and thus make people comfortable by withholding certain measures and providing pain relief.
Hospice does care deeply about dying with dignity. But the fact remains that suffering can continue even in hospice. And the argument that hospice often provides a period of reflection and mourning that abrupt death does not is only partially valid. Anticipatory grieving often includes the last stages of life and that stage is often prolonged and painful. A decision to allow a physician to assist and shorten the life of their patient can be slow and deliberate -- giving the dying person time to decide if they will avail themselves of the active dying methods. In fact, the data in Oregon indicates 90% of those who have the initial meeting with their doctor to discuss the process do not actually go through and get the prescription filled and ingest the medicine -- rather they feel empowered and part of the decision making process.
Less importance than the empowerment argument is the fact that nationally, our expenditures on health care are off the chart -- particularly in the last six months of life. Medical interventions are costly. Nursing care, assisted living, and hospice are expensive and some die bankrupt -- with debt passed on to family members. Our provider reimbursement system is heavily skewed towards procedures and active treatment. Terminal patients and their families are often caught in the do-whatever-it-takes cycle even when they do not want to be.
Regardless of religious belief, or lack thereof, human beings like to feel empowered over their lives. Choosing how to live, and the manner and timing of death are personal decisions. Active treatment, palliative care and active dying with safeguards represent the full panoply of choices that a competent, terminal adult should be allowed to exercise without fear of legal recriminations for them, their families or their doctors.
Patrice Hirsch Feinstein is a grief support counselor who has listened to survivors lament the final stages of their loved ones' lives. She was formerly the associate administrator at The Department of Health and Human Services when the hospice legislation expanding Medicare to include this kind of care was passed. Tara Diane Sonenshine is a former under secretary of state for public diplomacy and public affairs and teaches at George Washington University's School of Media and Public Affairs.